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Hello, everyone! I know it has been a very long time since I wrote to you here. One of these days, I will be able to tell you the entire story of why I haven’t been able to be as open to the world as I used to be. For now, I will tell you the vulnerability I have always cherished in writing was used to try to fight a battle I didn’t think could possibly hurt me more than EDS does. I didn’t expect what happened after, the publicity, the sudden move away from my home, and ultimately, some really severe PTSD I’m still not quite sure how to handle. For most of my life, I wanted people to know my name and to fight for what I believed in–until my name and fighting for what I believe in almost destroyed my life. I’m doing a lot better now than I had been. I have had a lot of help and support from a lot of people, many of them in this community–and I so appreciate the patience people have had with me as I have tried to navigate venturing back out into the public. My passion has never wavered, but my abilities and my needs have.

May is EDS Awareness Month, as most of you know. I posted a photo in my Snapchat story last night with the caption “Thanks, EDS” and giggled a little with my husband about it. Tammy (our wonderful leader) saw it this morning and mentioned I should share it with you for awareness this month. She was right. The picture is funny if you KNOW you have EDS. Your legs probably look like mine or at least they have looked like mine and they will again. It’s not so funny if you don’t know you have EDS and has the opportunity to educate a lot of people. So, here’s the photo:

Just a Regular EDS Night

I remember growing up and getting hurt many times. It seemed like I was spraining joints more often than I was taking spelling tests. The nearest ER was a frequent stop, so much so I think we had a running joke about a punch card for a free visit after ten stops. Back then, though, I was just a kid, covered in bruises, hurt again. I wasn’t diagnosed with EDS until March of 2016, when I was 25 years old. I always knew what was coming when we went for these visits. I would wait for the worst part. They would ask my mom to leave the room and then ask me questions to make sure I wasn’t being abused at home. Make no mistake about this: recognizing the signs of child abuse is an absolutely critical part of medical care. It was challenging for me because I am the victim of child molestation and I waited 11 years to come forward about it. When they wanted my mom to leave the room to ask me about whether or not she was safe, I was afraid they might figure out the other “thing” or take me away from the person who did keep me safe, the one who kept taking me to doctors no matter how far away the drive, no matter how many of them told her I was fine. I knew she was getting asked questions in the hallway. I knew they were looking for differences in our stories, keeping track of how many times I’d fallen off my bike. I remember even at 13 years old being confused about why she would bring me in covered in these bruises and asking for help if she were trying to hide something.

I wish my mom had known then what we know now and could have advocated for me. When my husband and I go to the ER now, which we still avoid but now only for a lack of knowledge about the more rare of my conditions, Hypophosphatasia, we are able to have them access my electronic medical records to see that I am a patient with Ehlers-Danlos Syndrome. My pain specialist makes himself available for calls about the condition in case they do have questions about the easy bruising. You see, I don’t know where one single one of these bruises came from. My husband is a VERY patient man who would never in a million years lay his hands on me, but I also could literally bump into him when walking across the living room and end up with one of them. I have bruised myself with one of the worst bruises I have ever seen from my own wheelchair, a device meant to limit injury to my person.

Why am I writing this now? I want people who might have legs that look like this to know what to ask their doctors. I want them to know the questions to ask that my mom didn’t know to ask and NOT for lack of trying. We had no idea what EDS was. More than that, though, I want doctors to know what else might cause someone to look like this. I want them to know it is so important to know the signs of abuse, but also to know how to test for conditions that might make me look like this from absolutely nothing abuse-related. I want them to understand this could be caused by the patient’s DNA and a bump into a kitchen counter. None of these bruises hurt when they happened or I would know where they came from.

Maybe the patient who is constantly in the ER with seemingly silly explanations for their injuries, like falling up the stairs (I can’t remember how many times I did that) and also with bruises on them like this also has stretchy skin, hypermobile joints, migraine headaches, and chronic pain. Maybe, that ER doctor could answer their questions or refer them to someone who can before they’re 25 years old and convinced they’re crazy. Maybe that child won’t be afraid about when their mom gets called into the hallway because their mom will already know to tell the physician that since the last visit, they saw another doctor and now they know the child has Ehlers-Danlos Syndrome, which is what is causing the easy bruising and susceptibility to injury–and the medical records will support that and eliminate the trauma of that fear.

The bruises aren’t fun, but the bruises on our mental health from not knowing for so long are much worse. You can’t see collagen, but there are visible signs of the defective version.

Thank you again for your patience, support, and love. I am blessed to be in a community of people who support each other no matter what. I look forward to writing to you more again.

-Stephanie

PS: To brighten the mood after such a tough topic, here are cute photos of my dogs:

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose.

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did!

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and thereforesee it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people.

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way.

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.

We Are Visible – Open Your Eyes

Details about the Film

SYNOPSIS:

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

Duration:

69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

This is probably the blog I’ve been most interested in writing since I agreed to write here, in this medium, for all of you. I’ve needed to write this here for two reasons:

For those of you who understand and need someone who feels it, too

For those of you who DO NOT understand and needs someone to break it down for you

If I had to list the most frustrating things about having Ehlers-Danlos Syndrome, the first one would be that there is no cure/easy fix. The VERY CLOSE second thing would be that you cannot see at all that I am dealing with this very harsh reality. Unless I have literally dislocated a joint in front of you, you have no idea that I deal with this condition or what I am handling on a daily basis.

A Typical 20-Something Selfie

So, here is me. If you know me personally, you’ve probably seen a few photos like this. I enjoy doing my hair and makeup. I love picking out clothes and finding jewelry to match. I even paint fingernail art, because it calms my anxiety and it’s actually something I taught myself how to do during my many major leg surgeries in high school.

The problem is, that people who don’t know me, also see this person daily. The problem is, when I park in a handicap parking space because I wear braces on both of my legs under my clothes and regularly dislocate the joints that connect my legs to my back, people see a blonde, well-dressed, make-up 20-something–and let me tell, they are NOT quiet about their thoughts on it. I regularly hear from people that I don’t look ill. I regularly hear that I don’t look like “anything is wrong with me.” I read a meme once that said “When you say I don’t look sick, I’m not sure if you’re insulting me or asking what concealer I use.” It made me smile, because for a second it took away the hurt of realizing people are judging me every day without understanding what is happening with my body, without understanding the sort of pain that can come with my multiple chronic conditions.

People with EDS also struggle because we don’t always have consistency in our reliance on mobility aids or our need for assistance. If I had a dime for every time someone made a crack about me “faking it” because I was no longer using a cane or crutches after working my butt off in physical therapy and having a “good day,” I would be a retired 27-year old. Some days, I have visible braces on multiple parts of my body. Some days, I need my crutches. Some days, I use a cane. Some days, I can’t really walk at all and I need to stay home. If you think the inconsistency is become I’m faking it and not because my body is inconsistent, I will happily trade you!

I think the problem is two-fold because sometimes, when I explain the condition, I’m told that if I’m dealing with that, I couldn’t really look nice or put the effort into my appearance. I’m told I couldn’t be working or doing what I’m doing with my life. It becomes a situation where it is impossible to win, because I’m seeking attention if I don’t make the effort to conceal how poor I feel and I don’t feel poorly if I do conceal it.

I enjoy putting together outfits and wearing makeup. For me, when I look better, I feel better–if only psychologically. When my body feels like it is absolutely falling apart and nothing is in my control, I see no harm in still feeling good about how I look.

There is no uniform for the chronically ill. You are NOT required to conform to someone’s expectations of what a “sick” person should look like. You do not need to justify to yourself or anyone that you do not “look sick” enough so therefore, your struggles are not as real or not as valid as those more visible. There is nothing fair about this situation–it is particularly unfair that it regularly includes providing context for who you are and how your body is simply because its outward appearance doesn’t match its internal composition.

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